Emily's Battle with Batten

31/10/2026

Happy Halloween 🎃👻🕷️

Here's some pictures of Emily from Halloween over the years. She's always loved to dress up ☺️

25/10/2026

I realise we've been a bit quiet on here lately. In all honesty this year has been a tough one! On a personal level I've found it the most difficult since Emily was diagnosed almost 5 years ago. As well as Emily and her batten disease, both Ricky and Lewis have had issues with their health this year too. I've found that I just haven't had the energy for much of anything the last few months, let alone posting on Emily's social media pages.

This weekend I've given myself a kick up the backside and I'd like to give you all a bit of an update on Emily.

Over summer Emily's speech seemed to take a bit of a dip. Unfortunately now her speech can be quite difficult to decipher and even me and Ricky find ourselves asking her to repeat herself constantly. I find this side of the disease particularly difficult to deal with as Emily has always loved to talk. When she was little we would always joke that she would end up doing a job which involved talking as she just never shut up. We can drive to London and she will spend the whole 4 hour journey talking to you 🤣 we're working alongside her speech and language therapist to come up with other ways for her to communicate so that she has these techniques mastered when the speech eventually goes altogether.

This year Emily's balance has gotten particularly bad. She now won't walk or stand unless she has something to hold on to. Getting on and off her school bus is becoming increasingly difficult and we've had a few tears since she returned to school last month. We had to stop her school swimming sessions as she was getting so worked up over them due to the issues with her balance that there really wasn't any benefit to them anymore. Getting in and out of the bath is also getting more difficult and work still hasn't started on our garage conversion for Emily.

The change in balance has affected her general mobility and Emily is very slow when walking now. Ourselves, school and Emily's physio decided it was time to put a referral through for a wheelchair and Emily's first set of wheels was delivered during the summer holidays. After a couple of days out over summer we soon realised that this wheelchair isn't really suitable for anything other than flat paths, so we may find ourselves fundraising for something more robust in the near future. Thankfully Emily hasn't wanted to use her chair much and still very much wants to walk when she can which is lovely to see. We really hope this will continue for as long as possible.

One of the positives from this year is that Emily is really thriving at school. She went into a new class in September and is really enjoying it. She likes her new teacher, all of the staff, the other children and the things that she has been learning about so far. She is such a smart girl and really thrives on being challenged at school. We had her EHCP review this week and they are doing some entry level tests with her this year in the hope that she can do her functional skills next year. So Emily's QTVI is working hard to ensure that everything is adapted for her so she can access the information herself.

Emily attended this year's review as they were interested on her thoughts on what she would like to do when she finishes year 11. Emily's job aspirations are to be an Avenger and an author 🤣 so I am starting on my next task of helping her to get a book published (I'm not sure I can help her with the other one).

One thing that broke my heart during Emily's review was when she was asked about friendships. Her reply was 'I don't have any friends' 🥹 Emily likes the children in her class but unfortunately these interactions don't go any further than school. Emily's sight and speech difficulties make it so difficult for her to interact with children, particularly children her age as she just isn't able to do what the other children can and it's really difficult for the other kids to understand what she's saying. I actually think it was this that gave me the kick up the bum that I needed and this weekend I have made some wonderful plans for us next year that I know Emily is going to love. Now to get on with planning her birthday which is in December!

I've included a few pictures of Emily from this year, because despite everything she continues to smile 🧡

17/10/2026

A team led by Dr. Michelle Hastings will advance a new RNA-based medicine for the most common form of CLN3 Batten disease toward clinical trials

05/10/2026

This month is Blind Awareness Month. It’s an opportunity to raise awareness of the experiences, achievements and contributions of people who are blind or visually impaired, while helping to build greater understanding across our communities.

By listening to lived experiences, challenging misconceptions and learning more about accessibility, we can all play a part in creating a more inclusive world. Small actions such as making information accessible, offering assistance respectfully and supporting equal opportunities can make a meaningful difference.

Let’s use this month to learn, share and celebrate, and to make inclusion something we practise every day. To learn more about Blind Awareness Month, click the link below:
https://ow.ly/jNb150ZUuj3

Image shows: Poster for Blind Awareness Day. It has a dark blue background with white braille on top. It also has a white ribbon in the middle of the image, as well as the phrase 'Blind Awareness Day'.

02/10/2026

Happy birthday to the best dad in the whole entire universe 🎉🎊🎂

Thank you for being our rock and supporting us in everything that we do. We love and appreciate you more than you will ever know.

Have the best day because you absolutely deserve it 🧡

23/09/2026

💙 CHILDHOOD DEMENTIA AWARENESS DAY | 23 SEPTEMBER 💙

Did you know that Batten disease is the most common form of childhood dementia?

Batten disease is a rare, inherited neurodegenerative disorder that primarily affects children and young adults. Children may begin life developing typically, before the disease gradually takes away skills they have already gained, including vision, speech, movement, thinking and memory.

For families it is heartbreaking - watching their child lose abilities, independence and precious moments of childhood, while facing an uncertain future.

There is still so much to understand about childhood dementia, and more research, greater awareness and ongoing support are urgently needed.

This Childhood Dementia Awareness Day, help us make sure Batten disease and the families affected by it are not forgotten.

💙 Forget Me Knot. Support BDSRA Australia with your donation
https://bdsraaustralia.org/index-donate.php

Together, we can help fund research, support families and work towards a future where children with Batten disease have more time, more memories and more hope.

20/09/2026

Poor Emily has really been struggling with her period this week 😢 she's been so heavy that she's been leaking through numerous pairs of period pants per day and also through the night. Unfortunately she had to be picked up from school on Friday as she was so upset. She hasn't been sleeping very well because of it which has resulted in a few naps over the weekend and a little sleep on mum.

We have a call with Emily's paediatrician on Tuesday so we will see if they have any suggestions for us regarding this.

Fingers crossed for a better week for Emily 🤞🏼

14/09/2026

We would like to say a huge thank you to the guys at East Riding FA Flexi Play who kindly put on two back to back games of football on Saturday, with all proceeds being donated to Emily's Battle with Batten

An amazing £560 was raised which will go towards our renovations to turn our garage into a bedroom for Emily and her memory making fund.

These guys had never met Emily before Saturday and we feel honoured that they chose our beautiful girl as the recipient of the funds from these games.

We will forever be blown away by the generosity we have received since Emily's diagnosis and continue to be thankful for the amazing community we have behind us 🧡

10/09/2026

This Saturday East Riding FA Flexi Play are putting on two games of football and have kindly offered to donate the proceeds from both games to Emily's Battle with Batten

If anyone would like to play in either of these games just let me know and I will send across the link to sign up.

Or if you don't fancy playing feel free to come along and watch, we will be there and the bar will be open 😊

06/09/2026